Parent Power

During the last few months, I have been writing about efforts by some legislators in Missouri and now Kansas to block the passage of Simon’s Law, a bill that exposed and sought to change the secret futility polices in hospitals that led to the death of Simon Crosier, a baby with Trisomy 18. I even wrote my own testimony in support of the bill.

But now in a stunning development, Dr. John Lantos wrote an opinion editorial in the Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment:

Thirty years ago, pediatric residents were taught that trisomy 13 and 18 were lethal congenital anomalies. Parents were told that these conditions were incompatible with life. There was a tacit consensus that life-sustaining treatment was not medically indicated. Clinical experience usually was consistent with this self-fulfilling prophecy.

But with social media, this changed.  Parents share stories and videos, showing their happy 4 and 5 year old children with these conditions. Survival, it turns out, is not a rare as once thought.”

This survival is even more impressive in light of a related JAMA article titled “Outcomes of Surgical Interventions in Children with Trisomies 13 and 18”   which stated that although “The median age of survival was 13 and 9 days, respectively, in children with trisomies 13 and 18”:

Among children with trisomies 13 and 18 who lived to 6 months, survival at age 10 years was 51% and 60%, respectively.

Note that what is changing the former medical perception of “incompatible with life” is not any new medical advance but rather loving parents who refused to accept the predicted death sentences for their babies, insisted on treatment and then used Facebook and other social and regular media to show off their children’s real lives. I call this Parent Power and it is based on love.

That power may help bills like Simon’s Law to finally pass.


I personally  learned about parent power when my daughter Karen was born in 1982 with Down Syndrome and a severe heart defect. 20+ years before Karen’s birth,  children with Down Syndrome were routinely institutionalized as accepted medical practice. But by the time Karen was born, almost all newborns with Down Syndrome went home with their parents and eligible early childhood programs.

What caused this dramatic change?

Again, it was primarily parent power.

Parents like Kay and Marty McGee not only ignored the standard medical advice to institutionalize their daughter but also fought for support and help for their daughter and others like her. They eventually founded the National Association for Down Syndrome in 1960 ( )

By working with other parents and reaching out to willing educational, legal and medical professionals, they helped change medical attitudes, the educational system and public acceptance of people with Down Syndrome who are now achieving goals once thought impossible.

Although it continues to be a long-term effort to ensure non-discriminatory medical treatment for people with Down Syndrome or other disabilities, people with Down Syndrome who were once predicted to die at an early age now have a life expectancy of 60 years and are achieving goals once thought impossible.


Unfortunately and on the heels of the welcome editorial comment on babies with Trisomy 13 and 18, comes the news about the tragic circumstances surrounding the death of little Israel Stinson.

Two-year old Israel died after a judge suddenly and unexpectedly rescinded a court order that prevented a California hospital from removing the ventilator from little Israel before his parents could get an opinion from another neurologist after conflicting medical opinions about whether or not Israel was brain dead.

In this case, parent power was overturned by a single judge after the family thought that Israel was protected by a court order.

Not only is this personally tragic for Israel and his parents but this development also serves to devastate the crucial trust needed in our medical and legal systems.




Ethics and Alzheimer’s –Part One: Why I Can’t “Walk to End Alzheimer’s”

In the 1980s, my mother was diagnosed with Alzheimer’s disease, a progressive mental deterioration due to generalized degeneration of the brain.  It was quite a shock to the family and at that time, there was an unfortunate stigma attached to Alzheimer’s that led  some family members to insist that mom’s illness be kept secret.

At one point, my mother even wound up in a psychiatric unit before we found a good geriatrician, a doctor who specialized in care for older people as well as dementia. My mother eventually died of cancer while in the later stages of Alzheimer’s but she was able to be cared for at home until she died in her sleep the day she went to a nursing home.

After my mother’s death, I was glad to later learn about groups like the Alzheimer’s Association   and the development of community resources to help people with Alzheimer’s and their families. It would have been helpful with my mother.

Since it started in 1980, the Alzheimer’s Association is now international and the largest nonprofit funder of Alzheimer’s research . The organization’s public profile has exploded through media coverage of celebrity supporters and fundraising efforts like the “Walk to End Alzheimer’s”,  the world’s largest event to raise awareness and funds for Alzheimer’s disease care, support and research.

However, I cannot walk for Alzheimer’s because of its support of embryonic stem cell research as well as concerns about the organization’s position statements on issues like medical treatment and tube feedings. I will be addressing those issues in future blogs.

I do not intend to just single out this organization or portray it as “bad”.

I have been a volunteer for several organizations whose causes have directly touched family members and friends. However,  I do examine each organization to determine how and where its fundraising is used before I volunteer to help.


This 2011 position statement on their website states:

 “The Alzheimer’s Association policy supports and encourages any legitimate scientific avenue that offers the potential to advance this goal, including human embryonic stem cell research; and, we oppose  any restriction or limitation on research, provided that appropriate scientific review, and ethical and oversight guidelines and compliance are in place.” (Emphasis added)

Raising funds for research resulting in a cure of any disease is laudable, but without ethical boundaries, such research can cross the line. Embryonic stem cell research necessarily involves the destruction of human lives in their earliest stages and should not be allowed on even just humanitarian grounds, much less funded.

Ironically, embryonic stem cells have been a great disappointment in human research and even very harmful in some cases while ethical, non-embryonic stem cells are achieving great breakthroughs, for example in treating  cataracts of the eye and even paralysis.

As a nurse, I have known for decades  about  the ethically obtained stem cells from bone  marrow donors  that now every year save  the lives of  tens of thousands of people with cancer and other diseases.

In fact, my own grandson’s life was saved 3 years ago because of a bone marrow transplant!

So while I appreciate the Alzheimer’s Association’s  effort to help people with Alzheimer’s and their families find practical resources for help and support , I cannot walk to raise research money for a group that not only supports embryonic stem cell research but also opposes any restrictions.


A new Illinois law was just signed by Governor Bruce Rauner with dire implications for pro-life health care providers.

As an August 9, 2016 National Catholic Register article titled  “Illinois Law Threatens Conscience Rights, Crisis-Pregnancy Centers” explains, this new law changes the former state Health Care Right of Conscience Act to require that pro-life doctors, nurses and even staff at crisis pregnancy centers  present abortion as a legal treatment option and are required to refer, transfer or give information about where to go for an abortion when a woman says she wants one.

While the terminology about other health care options is vague, the law specifically cites:

“family planning, counseling, referrals, or any other advice in connection with the use or procurement of contraceptives and sterilization or abortion procedures…”

Incredibly, this Illinois law  also defines conscience rights as merely religious:

 “Conscience” means a sincerely held set of moral convictions arising from belief in and relation to God, or which, though not so derived, arises from a place in the life of its possessor parallel to that filled by God among adherents to religious faiths

Ironically, as Kathy Bozyk, who operates the Southside Pregnancy Center in Chicago notes, while she is required by the law to discuss the alleged benefits of abortion and refer women to abortion providers, abortion businesses are not required to make referrals to crisis-pregnancy centers.

Instead, abortion groups like the National Abortion and Reproductive Rights Action League (NARAL) continue to actively fight crisis pregnancy centers, accusing them of false and misleading information as well as threatening women’s safety. They are a strong force working to get laws like this passed.


There is an unfortunate and surprising assessment of the law in the NCR article from Robert Gilligan, executive director of the Catholic Conference of Illinois:

According to the article, Mr Gilligan said that although the Conference was disappointed that the governor signed the law, the Catholic Conference was able to negotiate, with opposing parties, a revision to the original bill that the state’s 43 Catholic hospitals can live with, saying with regard to the requirement to refer, transfer or provide written information on where to find an abortion facility :

He said co-sponsors of the bill said even simply ripping out the pages of a phone book with names of all the local OB-GYNs in a certain area would be enough to comply.

If accurate, is this a helpful or even realistic response?

Fortunately, we have courageous, front-line  health care providers like Kathy Bozyk who refuse to comply, Illinois Right to Life continuing its opposition and pro-life legal groups like the Alliance Defending Freedom (ADF) who filed a lawsuit in state court against Governor Rauner on behalf of The Pregnancy Care Center of Rockford and the Chicago-based Thomas More Society that plans a lawsuit.

It’s important to note that this Illinois law comes on the heels of a December California law forcing pro-life pregnancy centers and state-licensed medical clinics to distribute information on where and how to obtain a state-funded abortion or face fines of $1000 a day.

So it is imperative that  all of us throughout our nation work to ensure that strong conscience rights be upheld, strengthened, correctly defined and even expanded to include all health care ethics issues, especially in the face of possible or actual assisted suicide laws.

Conscience rights are essential to help us protect our patients from a healthcare system that is increasingly succumbing to a “culture of death” mentality.

Can We Choose to Live?

In a 2016 study “What does “futility” mean? An empirical study of doctors’ perceptions” in the Medical Journal of Australia distilled this definition from the majority of responses:

Futile treatment is treatment that has only a very low chance of achieving meaningful benefit for the patient in terms of:

  • improving quality of life;

  • sufficiently prolonging life of acceptable quality; or

  • bringing benefits that outweigh the burdens of treatment

Alarmingly, the article also states: “Doctors may reach a view that treatment is futile, informed by their definition of futility and clinical indicators such as functional status, disease severity, and age.” (Emphasis added.)

Over 10 years ago, I wrote an article “Futility Policies and the Duty to Die” about little-known futility policies being promoted, even in Catholic hospitals. These policies allow doctors and ethics committees to overrule patients’ or families’ decisions to continue  care or treatment when a person’s prognosis or “quality of life” was considered too poor.

In February, I wrote about the still not passed Simon’s Law here in Missouri that exposed the secret futility policies that led to the death of Simon Crosier, a baby with Trisomy 18.

However, a couple of weeks ago, a horrified nurse friend showed me two health care directive she recently received as a patient. One was from a Catholic  health care facility and the other was a standard Missouri durable power of attorney directive . The wording in both made her question whether such futility policies were now being incorporated into such directives.

I understand her concern.


A person signs such a directive in order to have a family member or other trusted person make health care decisions when they are incapacitated. An legally incapacitated person is  defined as  a “Person unable to make rational decisions or engage in responsible actions. Mental and/or physical deficiency, disability, illness, drug use causing temporary or permanent impairment.”

“Living wills” and other advance health care directives,  invented by so-called “right to die” groups, claimed to give people the power to choose at the end of life

Remembering the prolonged dehydration deaths of Nancy Cruzan and Terri Schiavo, two non-terminally ill but severely brain-injured women said to be in the so-called “persistent vegetative state”, a person might sign a directive but want to prevent such a terrible death for himself or herself.

However, while this Catholic directive has a section to make such a decision, it also an asterisked section attached to both withdrawal and refusal of withdrawal:

I DO NOT AUTHORIZE my Agent/Proxy to direct a health care provider to withhold or withdraw artificially supplied nutrition and hydration (including tube feeding of food and water) as  permitted by law.*

*(In a XXXXX health care facility, nutrition and hydration may be withheld or withdrawn if I have an irreversible condition which is end-state or terminal AND if the means of preserving my life have likely risks and burdens which outweigh the expected benefits or are disproportionate without a reasonable hope of benefit.) (Emphasis added)

Using such terms as “end-state or terminal”  could, for example, apply  not only to a “persistent vegetative state” but also to Alzheimer’s or other dementia. “Artificially supplied” could encompass a simple IV while the asterisked section inexplicably does not even include the words “artificially supplied” before the food and water.  Along with using terms like “disproportionate without a reasonable hope of benefit” without stating who makes that determination or what the criteria is for benefit, the average person could be understandably confused in a real life situation.


Many, if not most, Missouri hospitals have this directive.

This directive has a section stating:

If I am persistently unconscious or there is no reasonable expectation of my recovery from a seriously incapacitating or terminal illness or condition, I direct that all of the life-prolonging procedures that I have initialed below be withheld or withdrawn. (Emphasis added)

This list includes not only “artificially supplied nutrition and hydration” but also antibiotics, CPR and “all other life-prolonging medical or surgical procedures that are merely intended to keep me alive without reasonable hope of improving my condition or curing my illness or injury.” (Emphasis added) Note that, according to the directive, a person need not have a terminal illness or be in a coma to qualify for withdrawal.

The next section can seem reassuring if a person has qualms about a decision to withdraw treatment or care being made too quickly or influenced by age or disability.  However, the directive only states that such treatments or care may  be tried-at the doctor’s  discretion-for an undefined “reasonable”period of time before withdrawal. Unfortunately, this section also includes automatic consent to pain relief, even in dosages that can suppress breathing and appetite as in terminal sedation:

3. However, if my physician believes that any life-prolonging procedure may lead to a recovery significant to me as communicated by me or my Agent to my physician, then I direct my physician to try the treatment for a reasonable period of time.  If it does not cause my condition to improve, I direct the treatment to be withdrawn even if it shortens my life.  I also direct that I be given medical treatment to relieve pain or to provide comfort, even if such treatment might shorten or suppress my appetite or my breathing, or be habit-forming. (Emphasis added)

The Catholic health directive also includes this section, almost verbatim.


With the help of the media, mentally disabling conditions like Alzheimer’s are often portrayed to the public as a fate worse than death and a terrible burden on a family. Tragically, the “right to die” mentality has led many people to conclude that they should die if they develop such conditions or, if dying, that their death may be accelerated to spare their families.

As a nurse who has seen the problems with advance directives firsthand, I helped design my own durable power of attorney advance directive without exemptions or checkoffs that could be misused or misinterpreted. I also educated my husband and family about the medical ethics involved.

As I wrote in my blog Living with “Living Wills”, there are better alternatives available to the standard kinds of advance directives even though no directive is foolproof.

Adequately informed consent is required for legal consent to surgery. Shouldn’t advance directives that involve life or death be held to the same standard before signing?